Radio Active Iodine Treatment

883ldyna
883ldyna Member Posts: 5
edited March 2014 in Thyroid Cancer #1
Does anyone know the normal dose of RAI Radio Active Iodine Treatment that is given for thyroid cancer? I was given 153. I'm trying to find out if this dosage is high. It's been less than a year since I had the RAI treatment. Since late March of this year and I have been in a great deal of pain in the jaw area. It all started with the feeling of an ear infection in my left ear. I went to urgent care and the doctor said my ear looked fine, but gave me some prescription drops. The pain didn't go away and ended up going to see an E.N.T. Ear, Nose and Throat specialist within my medical group. The E.N.T. I saw was the surgeon that removed my whole thyroid gland because he found cancer in the middle portion. Dr.&^%$&^* felt I was having inflammation of the salivary glands. My cheeks only got swollen twice, and of course they weren't swollen during the two visits I had with him. He said to drink lots of water, use warm compress and suck on lemon drops. He thought I might have a stone in one of the ducts. The doctor did say if the pain didn't go away in three months surgery may be a possibility. That was a huge red flag. I then requested a second opinion from another E.N.T. specialist OUTSIDE our network, which was granted. The second opinion doctor didn't confirm the pain was strickly salivary glands. He suggested I be tested for Sjogren's syndrome which is an autoimmune disorder. I was then seen by a rheumatology doctor and the test came back negative. I have had a c/t scan of both sides of the face to see if there was a tumor or a stone in the duct. No tumor or stone. The intense pain has never gone away. I have made an appointment to see an oral surgeon to have pamaramic xrays taken and have a chat. The pain is never consistant. Meaning one day it's on both sides of my jaw bone, the next it can be only on one side or the other. I am living on over the counter pain medications anti-inflammatory types. I.E. naproxen/ibuprofen. Does any one have any suggestions or a clue.

Comments

  • amyrhona
    amyrhona Member Posts: 10
    #2
    I don't know what the normal dose of RAI is, but I know I got a high dose because that's what the radiation oncologist told me. I know I used to know the dose, but I forget now what is was. My last RAI was 3/2006. I have had inflamed parotid salivary glands before and it really hurts. I was going to suggest you see an oral and maxillofacial surgeon. He or she may be able to help. My PCP was who I saw b/c my endocrinologist was no help and neither was the ENT oncology surgeon! And that is supposedly her specialty! I got a diagnosis, but that was all. I was told I didn't suck on enough lemon drops after my first RAI. Well, no one told me to. The next times I always start sucking on actual lemons afterwards and really get that saliva flowing. I have chronic dry mouth and dry lips because my salivary glands are "ropy" feeling and filled with a bunch of scar tissue instead of functioning salivary gland tissue. So all I can say is get this taken care of quickly because you don't want to lose the function of those salivary glands, plus you are in pain. Just keep at it until someone treats you. And I wouldn't let anyone do more surgery on my parotid's than I already had. During my TT they had to go in them to remove cancer, and that is what caused the scar tissue, but other than that no one is touching mine! They're messed up enough. No one tells you when you get diagnosed all this stuff that can go wrong. At least no one told me! Good luck and I hope the oral surgeon is helpful. Let me know. -Amy
  • 883ldyna
    883ldyna Member Posts: 5
    #3
    amyrhona said:

    I don't know what the normal dose of RAI is, but I know I got a high dose because that's what the radiation oncologist told me. I know I used to know the dose, but I forget now what is was. My last RAI was 3/2006. I have had inflamed parotid salivary glands before and it really hurts. I was going to suggest you see an oral and maxillofacial surgeon. He or she may be able to help. My PCP was who I saw b/c my endocrinologist was no help and neither was the ENT oncology surgeon! And that is supposedly her specialty! I got a diagnosis, but that was all. I was told I didn't suck on enough lemon drops after my first RAI. Well, no one told me to. The next times I always start sucking on actual lemons afterwards and really get that saliva flowing. I have chronic dry mouth and dry lips because my salivary glands are "ropy" feeling and filled with a bunch of scar tissue instead of functioning salivary gland tissue. So all I can say is get this taken care of quickly because you don't want to lose the function of those salivary glands, plus you are in pain. Just keep at it until someone treats you. And I wouldn't let anyone do more surgery on my parotid's than I already had. During my TT they had to go in them to remove cancer, and that is what caused the scar tissue, but other than that no one is touching mine! They're messed up enough. No one tells you when you get diagnosed all this stuff that can go wrong. At least no one told me! Good luck and I hope the oral surgeon is helpful. Let me know. -Amy

    Amyrhona:
    I did go to see an oral surgeon. Panoramic X-Rays were taken which he viewed. The oral surgeon doesn't feel that my pain is from Salivary Glands, from the history I explained to him. He feels that all my pain is from clinching my teeth at night while I sleep because of stress. The doctor had two suggestions. One go back to my regular dentist and have a splint/bite plate mold taken so that it can be made. I have done that but the impression mold had to be sent to the lab in Los Angeles. It can take up to 10 days before I receive it. His second suggestion was to attend a Yoga class. Not the kind that puts you into a pretzel but the type of Yoga that teaches you how to breath and meditate to releave stress. I even when to a acupuncturist that was highly recommended by a friend. It didn't help at all. What a night mare this whole mess is. I won't give up though, because of the pain. I did get a chance to speak directly with the onocolgist that gave me the RAI treatment. Again from every thing I discribed to him regarding the pain he too doesn't think it's typical of salivary gland problems. Plus because this came out of the blue way after I had the RAI that is another factor of why the oncologist doesn't think it's the glands.
  • straussu
    straussu Member Posts: 22
    #4
    dose of RAI
    I also was given 153. I just had my treatment last week. My doctor said that the dose is calculated based on weight, age, size of tumor, etc. I haven't had any pain or gland issues yet, but I posted a separate question about coughing and hoarseness.
    Good luck to you.
  • wknox
    wknox Member Posts: 20
    #5
    ear pain
    Recently i under went a needle asperation in which it affected my ears but i also have tmj really bad. you might want to check with your dentist stress does alot of strange things to our body. tmj is the muscel not the tooth. hope you get some reief.
  • wknox
    wknox Member Posts: 20
    #6
    883ldyna said:

    Amyrhona:
    I did go to see an oral surgeon. Panoramic X-Rays were taken which he viewed. The oral surgeon doesn't feel that my pain is from Salivary Glands, from the history I explained to him. He feels that all my pain is from clinching my teeth at night while I sleep because of stress. The doctor had two suggestions. One go back to my regular dentist and have a splint/bite plate mold taken so that it can be made. I have done that but the impression mold had to be sent to the lab in Los Angeles. It can take up to 10 days before I receive it. His second suggestion was to attend a Yoga class. Not the kind that puts you into a pretzel but the type of Yoga that teaches you how to breath and meditate to releave stress. I even when to a acupuncturist that was highly recommended by a friend. It didn't help at all. What a night mare this whole mess is. I won't give up though, because of the pain. I did get a chance to speak directly with the onocolgist that gave me the RAI treatment. Again from every thing I discribed to him regarding the pain he too doesn't think it's typical of salivary gland problems. Plus because this came out of the blue way after I had the RAI that is another factor of why the oncologist doesn't think it's the glands.

    i where a splint on a
    i where a splint on a regular basic. it really helps
  • Carina2
    Carina2 Member Posts: 1
    #7
    amyrhona said:

    I don't know what the normal dose of RAI is, but I know I got a high dose because that's what the radiation oncologist told me. I know I used to know the dose, but I forget now what is was. My last RAI was 3/2006. I have had inflamed parotid salivary glands before and it really hurts. I was going to suggest you see an oral and maxillofacial surgeon. He or she may be able to help. My PCP was who I saw b/c my endocrinologist was no help and neither was the ENT oncology surgeon! And that is supposedly her specialty! I got a diagnosis, but that was all. I was told I didn't suck on enough lemon drops after my first RAI. Well, no one told me to. The next times I always start sucking on actual lemons afterwards and really get that saliva flowing. I have chronic dry mouth and dry lips because my salivary glands are "ropy" feeling and filled with a bunch of scar tissue instead of functioning salivary gland tissue. So all I can say is get this taken care of quickly because you don't want to lose the function of those salivary glands, plus you are in pain. Just keep at it until someone treats you. And I wouldn't let anyone do more surgery on my parotid's than I already had. During my TT they had to go in them to remove cancer, and that is what caused the scar tissue, but other than that no one is touching mine! They're messed up enough. No one tells you when you get diagnosed all this stuff that can go wrong. At least no one told me! Good luck and I hope the oral surgeon is helpful. Let me know. -Amy

    radio active iodine & dry mouth
    Hi, I've just been checking out your comments regarding RAI and saliva gland problems and dry mouth. I had 125 millekuries in April 2008. Both submandibular saliva glands went first, starting with pain and swelling in the summer of 2008 and then finally losing all function in November. Both my parotids just went over the past two weeks. I'm really depressed - my mouth is totally bone dry. I've already lost a tooth from all this. It's really hard to eat, to talk (I'm a university professor, so doing my job is hard - lecturing is almost impossible these days). Etc, etc. My endocrinologist (at Sloan Kettering, where I had the nuclear medicine) told me that the only saliva gland specialist is at Columbia Presbyterian. I've bee working with this doctor since January 2009, getting cortisone injections into the ducts of all the affected glands. I've gotten not function back at all. And it's been really expensive (he doesn't take insurance). I did the sour-candy-sucking routine after the treatment - it didn't matter in the long run. Here I am with absolutely no saliva. :( They tell me that, at my dosage, it's unusual to lose so much function. ??? I recently heard about a study involving people like us and acupuncture - do you know anything about this? Thanks, Karen
  • jcvolt
    jcvolt Member Posts: 69
    #8
    Rai can vary
    30-300. It always seems to do more harm than good and most people who get it end up with their cancer coming back,many suffer permanent damage ranging from hearing and vision loss to sinus troubles and even luekemeia.
  • [Deleted User]
    [Deleted User] Posts: 0
    #9
    jcvolt said:

    Rai can vary
    30-300. It always seems to do more harm than good and most people who get it end up with their cancer coming back,many suffer permanent damage ranging from hearing and vision loss to sinus troubles and even luekemeia.

    Hello All,

    For up to date information on thyroid cancer and its treatments please use the link below:

    http://www.cancer.org/docroot/CRI/CRI_2_3x.asp?dt=43

    You can also contact the American Cancer Society's National Cancer Information Center for answers to questions you may have regarding treatment of thyroid cancer and possible side effects. They can be reached 24 hours a day at 1-800-227-2345.

    We wish all of you the best on your treatments.

    Kind regards,

    Your CSN Staff
  • Unknown
    Unknown
    #10
    This comment has been removed by the Moderator

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